When someone you love has Alzheimer’s, holidays and days of family gatherings like the Christmas season can be bittersweet. At this time of year, I am so thankful my faith assures me that I will see my family again in heaven. That doesn’t mean I don’t miss my mom today. What makes it bittersweet is that she is still alive. But the ‘mom’ part of her is more or less gone.
Now that this Christmas is behind us, I would like to find words to describe it though no doubt they will wander a bit. What I am feeling is a form of grieving. Pre-grieving I call it, much as you feel when someone you love is terminally ill over an extended time. And it’s okay. It’s a natural part of the process, both for Alzheimer’s and a terminal illness. In each, you lose a part of the relationship–and the life–you expected, but months or years before death occurs.
At first I felt guilty with the feeling, selfish actually, but if someone reading this hasn’t reached the same conclusion yet, I hope the thoughts written here will help. I do miss Mom. And part of that is for selfish reasons, wishing she could be there with understanding, loving eyes to comfort me when I need her. After all, she’s my mother. I wish we could do the little things together like making cookies, Christmas shopping, fixing our big family dinner. I wish she would reach out to hug us. Yet our family is really lucky. We still get to hear her laughter, to see her smile and giggle often. I’m so grateful that part of her is still with us.
This isn’t meant to be depressing. The sad feelings will pass soon. They always do. Our family has been dealing with her Alzheimer’s for more than a decade. I am thankful and enjoy every day of the time we have with her.
Learn to Treasure Now
You don’t get to go back
You go through so many stages as you adjust to the disease, starting with the forgetful moments, the repetitive conversations. Once in awhile Dad would get frustrated with Mom, telling her “you just said that.” It would be frustrating to anyone at times if that goes on all day. After a while though, you learn to go along with it and just respond as she would expect. I remember more than one conversation where she repeated, “Aren’t those pretty yellow flowers,” ten times in less than fifteen minutes. Looking back, it was her effort to remain the good hostess, to be sociable.
It’s interesting how your feelings will change. Now she doesn’t talk much at all, managing only occasional complete sentences. Another stage of the disease. Then you would like to go back and live those days all over again when she repeated herself. I’d happily listen to her to hear her sweet voice. Some days she will get chatty still. I love those days and try to call a sibling when she is like that so they can get in on the moment. It’s touching to see her engaged in a conversation.
The 36-Hour Day
This may be the most read or suggested book on Alzheimer’s. Recommended by doctors, often called the bible or training manual for the disease, it is a book you will refer to over and over when you question what is happening with your loved one.
Learning to Speak Alzheimer’s
A very well done book that covers the basics you will need in the early stages, as well as methods of coping and adjusting at each stage. I especially appreciated the habitation model she discusses. I would recommend this for anyone facing Alzheimer’s or dementia in their family.
What’s Next is Next
Major attitude adjustments may be required
When you think you have come to terms with one stage, a new one will occur that once again stops you in your tracks. We are blessed that Mom always has been very agreeable and easy to get along with. She has tearful times, which break your heart, but is otherwise content. Some families aren’t so lucky. Anger, agitation, and sometimes paranoia come out as the disease progresses. Quite often these moods last only briefly and can be redirected.
As a daughter, I also feel fortunate. It must be much more difficult to have a spouse with the disease. Not only if they eventually don’t recognize you, but also if they attach to someone else in the home where they live. I’ve seen that happen a few times at my Mom’s residence. as a daughter, I can be happy for them, pleased that it makes them much more at peace, more content. But for a husband or wife to see their spouse holding hands with someone else is very difficult.
Hopefully they do reach some level of acceptance and realize that it isn’t a choice the resident makes deliberately. Their memories just seem to make them aware that part of them is missing, so they seek out someone for comfort. That is my observance and opinion only, mind you. I hope that if it happens, the spouse can adapt for the peace it brings their loved one. You can visibly see the calm fill their faces sometimes, just having someone to hold hands with.
My parents were married for seventy years before Dad died. Mom was used to having him there beside her. It must be similar for most residents. How strange and insecure it must feel to have that empty space without the memories that would normally fill it.
Hanging Out with Alzheimer’s
Spend Some Time with Them
The more you see them, the easier it gets.
For the family, it’s all about acceptance. And I’d say ninety-five percent of the time I manage it. I love visiting Mom, sitting with her, enjoying the other residents who are there with her. When I stop to chat with them, laugh with them, it brightens my day more than theirs. Seeing them talking to each other (often with neither speaking clearly), laughing with each other (without caring why) is a very sweet thing.
They aren’t invalids to be afraid of, they are lovely seniors who have led very full lives, filled with both happiness and sorrow. If you get a chance to learn their histories, you’ll be impressed and amazed.
Don’t be afraid to be with all the residents. Mom prefers to be out with others rather than in her room. If we go there, she usually just dozes off. If we are out in the gathering area, she is involved, more likely to be engaged. That is more fun for both of us.
When a new stage hits, I still have those moments when it feels like my heart drops to my stomach. Breathe through it, let it sink in, and then cope. You will adjust. Sorry, but it will happen again and again during the course of Alzheimer’s. Actually, it is pretty amazing how often–and how well–we do adjust.
If it happens in your family, I hope you don’t choose to avoid it instead. I hope you embrace their new lives and stay a part of them. The less you see your loved one the harder it can be. Not only that feeling of discomfort you may get walking through the door when visiting them, but also because it can make the changes in them harder to face.
You Have to Laugh
Laughter brings a sense of “I’m okay”
Laughter gets me through it. I have to laugh. Hopefully I’m not the only one. It is with such fondness, not at their expense. Finding the missing remote control up mom’s jacket sleeve (after we had been looking for it for two days), seeing a resident wearing several pairs of pants (most I’ve heard is nine at one time), watching them enjoy a movie or playing a game.
One day I watched a lovely lady trying to pour the remaining contents of a bowl onto her spoon. Perhaps a little mixed up, but nevertheless she was concentrating on it! Even watching them in a bad mood (not so funny if it is constant) is awfully cute knowing in a few minutes they will be happy and laughing again. I think it is important to enjoy them however you can. And to hear them laugh is honestly a delight.
Every so often though, at times like Christmas, it will hit me. I still miss the mom who would joke, laugh, comfort, hug, say whatever what needed to encourage us. Her children were so very lucky. Mom was very good at her job! She was always there for us, she took such good care of dad, she was full of love and caring. Now it’s our turn to return the same. I’m thankful I am able-and want-to do it.
A Short Video on the Stages of Alzheimer’s
Gifts That Seniors Will Love
If you are looking for a little gift, there a few that never go wrong. My two favorites are shown below. A life sized baby doll is another hit, socks and more socks, games and puzzles. Think comfort, warmth, and easy to play or puzzle.
A Cozy Throw for Warmth
A blanket throw is always at the top of my list for seniors, with or without Alzheimer’s. As we age, we seem to feel the cold more. The folks where Mom lives are always chilly. You can never get too many of these. I buy a bunch over the holidays for the residents to have in the main living room.
A Stuffed Animal for Comfort
Stuffed animal are loved by the residents at Mom’s home. Any size too, as long as they are soft and squeezable. This one is a big hit, since you can remove its stomach and warm it up in the microwave. Toasty and comforting. Who wouldn’t love this?
For More Resources
Sometimes it helps simply knowing someone else is coping with the same problems.
If I you would like help with any questions or issues, I’d be happy to listen. For more information, please feel free to contact me at AlzheimersHQ.